What was touted to us as the most hopeful new drug for
Kels back in March has now been taken from our arsenal due to an unusual side
effect that so far cannot be explained.
It turns people irrevocably blue.
Like Smurf-blue. Since they (has
anyone ever quite figured out who “they” are?) cannot figure out the why of it,
Kels has to come off. No big loss since
it didn’t seem to help with her overall seizure control anyway and it is very
expensive. So we’re back to the regular meds,
which currently includes Keppra, Lamictal, Vimpat, Klonopin, Diastat as needed,
Depo-Provera (to help with the hormonal induced seizures), and Lexapro to try
to combat the effects of all the drugs, the epilepsy-induced depression, and
life as a home-bound 21 year old in general.
But wait! Her
neuro says that there is another up and coming, promising drug that should be
available soon. I can’t remember the
name of it currently, but he’s got great hopes (sounds like a familiar song,
doesn’t it?). We’ll see. She’s taking it well, even through the
seizures that’ve been happening with the all-too-familiar playing with the
medicine. I wish some days that I could
blink and take it all away from her, but sometimes our lot in life isn’t
fair. Sometimes our struggles aren’t
even about us; they are used through us for a higher purpose. Maybe we’ll see a breakthrough in her
lifetime in time enough to help her.
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